In my last post, you met Catherine, a young woman who came
down with a stomach bug but was ushered through numerous blood tests and a CT
scan, only to be even more confused than ever. You saw how shared
decision-making needs to begin with the process of establishing a partnership
for shared diagnosis, because diagnosis is the first and most critical step to
your medical care.

#1. Find a physician
who agrees with shared decision-making for diagnosis. Your doctor should
listen to you, care about you, and feel comfortable—even seek out—involving you
as a partner in the decision-making process. You will quickly see whether your
doctor gives lip service to the partnership or really believes in it. Someone
who really believes in it will work with you and welcome and actively solicit your
suggestions. Someone who isn’t will quickly exhibit signs of impatience and
defensiveness. If you are always respectful while asking questions, your doctor
should welcome the input rather than feel challenged by it.

#2. Express your
intentions to your doctor. Doctors aren’t mind readers, and are probably
conditioned to patients being passive participants in their healthcare. No
matter if this is a new doctor, or one that you’ve had a relationship with for
a while, state clearly at the beginning of your visit that you want to be
involved as a partner in your own decision-making process. Ask to share in your
doctor’s thought process about your diagnosis. Inquire about what it is he/thinks
you have. Say that you want to be involved in figuring out what you have and
what to do. If your doctor does not respond positively, perhaps it is time to
look for another care provider.

#3. Help your doctor
help you.Most diagnoses can be made by the story—the history of your
illness—alone. Yet, one of the most frequent complaints patients have is that
their doctors don’t listen to them. No doubt, there are limitations and
pressures on the doctor’s time, but neglecting to listen to you will result in
misdiagnoses. You can help make sure your doctor listens to you by telling agood story. Rehearse it in advance and make sure you tell a concise version.
Begin at the beginning and proceed chronologically. Provide context, such as
how it affected your life. Use your own voice instead of what you think is
medical jargon. Write down key details so you don’t forget, and practice the
delivery. Knowing how to convey your story effectively is a key part to helping
your doctor help you get to the right diagnosis.

#4. Make sure you
understand every test that is ordered. Every test should be done for a
specific reason. Study after study shows that there is no role for the
“screening” test: doing “basic labs” or a “screening CT” is like fingerprinting
the entire city to search for a suspect, because it’s ineffective and likely to
end up with confusing results. Not to mention that every test, even the basic
blood draw, has potential harms (a CT has many more potential harms, including
increasing your lifetime risk of cancer). If your doctor asks for lab work to
be done, ask what blood work is requested and why. If your doctor asks for a CT
scan, x-ray, MRI, etc, ask what it is looking for. How is the test going to
change your management? Is it necessary? What are the possible harms? What are
the alternatives? These are the same questions you would ask if you were
deciding whether to treat and how to treat your illness, and making the
diagnosis should be no different.

#5. Make decisions
together, always with the diagnosis in mind. A test or procedure should be
done only if it helps make your diagnosis; otherwise, what’s the purpose? The
treatment should be targeted to the diagnosis; otherwise, what is it being done
for? Perhaps there are two or three possible diagnoses; what is going to be
done to try to narrow this down? What’s the natural course of the illness; what
should you expect and what can you do to start feeling better? You need to be proactive in thinking through and asking questions, and if you have a willing
physician (as you should), you should have all of your questions answered. Keep
asking if your diagnosis does not make sense to you.

A critical component of shared decision-making is to work
with your doctor to figure out your diagnosis. Focusing on this first, key part
of your care will have transformative effects on your health.

Imagine, how different would it have been if Catherine were
involved in the very beginning with her diagnosis. She would have been able to
tell her story and ensure her doctors listened, which could have led to the
diagnosis without any tests at all. She would have avoided an unnecessary CT
scan and unnecessary blood work, along with the all the potential harms and
confusion of the tests. She would have received her diagnosis and understood
what it is and how to treat it. She would have gone home, reassured and feeling
better.

You may be dissatisfied and frustrated by the way your
medical care is today, but there is a way to make it better. You hold the key
to transforming your health. Try it on your next doctor’s visit, and focus on
shared decision-making towards making your diagnosis.

Tried it? Have suggestions? I welcome your comments!

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About Me

I am an emergency physician and public health leader with a passion for patient advocacy. Inspired by my experiences as a caregiver to my mother, I work to educate and empower patients and families so that they receive the best care possible. I received my medical training at Washington University in St. Louis and Brigham and Women's Hospital and Massachusetts General Hospital in Boston, and now serve as the Director of Patient-Centered Care Research, Attending Physician in the Department of Emergency Medicine, and Assistant Professor of Health Policy in the Milken School of Public Health, at George Washington University. My book is When Doctors Don't Listen: How to Avoid Misdiagnoses and Unnecessary Tests; more information at
www.drleanawen.com // @drleanawen